Gene test results to be passed on without consent

Anna Patty

PEOPLE tested for predisposition to a genetic disease will no longer have a say in whether their results are given to their close relatives, under proposed changes to NSW laws.

The NSW Health Minister, Jillian Skinner, has introduced legislation to allow doctors to inform a patient's blood relatives they are at risk of having or developing a serious illness. Such tests can be used to identify whether people are at increased risk of cancer or heart disease.

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''Sharing of the results of genetic testing is a powerful public health tool that can help individuals take preventative actions to avoid life threatening and debilitating diseases,'' NSW Greens MP John Kaye said.

''However, it must be accompanied by gold-standard privacy protections. People seeking insurance should not be disadvantaged because their relative carries a genetic disorder.

''Without significant amendments to this legislation … there is a real risk that the benefits of genetic testing will be compromised by the impacts on privacy and access to insurance.''

Mrs Skinner said the changes were designed to bring NSW in line with the Commonwealth and other states.

''The bill recognises the sometimes competing interests between a patient's desire for privacy and confidentiality and a relative's possible need to be provided with important and possibly life-saving genetic information, by establishing an appropriate framework in respect of the use and disclosure of genetic information without consent,'' she said of the changes.